Friday, 28 January 2011

Is it crunch time?

We seem to be entering the last stages of the cancer journey. This is very hard, which is to be expected. However much you try and prepare yourself for the inevitable, it hits you like a ton of bricks. I thought i had prepared myself, and also have always felt that we cope very well with it. What hit me this week though, is there is no "we" in this. Kevin and I have helped each other through this journey. We have been there to support each other, mainly with inappropriate humour and the odd argument followed by a frank chat about how well we are doing.

My friends keep saying "you don't have to do this alone", and thankfully i am not alone, they are doing many practical things for me. But i am still alone. This is not one you can delegate, its not like filing, or a project that someone else can do for you. Its not really possible to say "Can you please sit with my husband while he is in pain and suffering, because i really don't have the time to do this...." as much as my body sometimes screams to do so, i can't walk away from this, and i have no choice but to face it alone. Normally when things are hard, i go home to Kevin and whinge a bit, talk about how awful/ stupid it is. When i go home after this, i will have to remain strong and composed for Dennis.

So yes, i am getting better at asking for help, and have farmed out many duties, but there is no-one else who can do this for me, and no-one who can make it feel better afterwards. That does not mean that i won't appreciate the calls from friends etc, but i know that it will never be the same. Kevin has always been good at getting me through things, sometimes a bit brutally, he doesn't tolerate "victim behaviour" well, and can be a bit harsh at times, but we always get through it - together. This one, i have to face alone.

I had always assumed/ hoped that my first "watching someone die" experience would be someone other than my husband. I am not scared of being alone, i have been alone before. I am not scared of being a single parent, although it was not what i wanted. But i am terrified of watching the man i love fight for every breath and look so vulnerable. "Crunch time" is the bit that really scares me and here we are.

Sunday, 23 January 2011

People's reactions to my reaction

One thing that has struck me heavily this week, is the fact that people have very fixed ideas about how you should deal with anticipatory grief, as Kubler-Ross calls it. Two people have actually, in a roundabout way asked me if i love Kevin!

Obviously i don't walk into a room looking desolate and people are surprised that i am still working and still doing all the ordinary things that i am doing. We have been on this journey since December 2004, it is not new to us. We need money, so i work, we need routine, so i keep going! Just before christmas the doctors put a timescale on things, but we have known all the way along, that unless some new miracle cure came out, this was going to kill Kevin. Part of our battle as a family has been to set things up so that we were ready for that. I swapped jobs to lecturing, partly to be more flexible, i don't want Dennis to grow up a "latch-key kid". Kevin has always encouraged me to work hard, when he was first diagnosed with cancer i nearly gave up doing my studies for my MSC, but he told me "you must carry on, you need this more than ever."

The news before christmas was a bitter blow to us, but perhaps not that unexpected, however others have found it much harder. Many people see Kevin and comment on how "well" he looks, how able he has always been, it was only in September that he walked part of the Great Wall of China for charity. One time during treatment he had very glowing skin, and a mother at school asked him "have you been skiing?" "no," he replied, "just for chemo!"

Over the years he has often complained that without any physical symptoms to show his illness it is easy to dismiss him as "well". He has recently lost his hair, suddenly one morning, it fell out, after the radiotherapy. Kevin laughed, "i was going to get it cut yesterday, just as well i didn't."

Hair loss is always a distinctive sign of "cancer", but some of the treatments have been brutal and harsh, but to those outside of this house, they don't see the sickness and diarrhea, shivering and tiredness. When we emerge from our weekend of "treatment hell", normal service resumes and everything seems fine. To the outside world we are "fine". Because of this people tend to think that this is sudden, and a shock. I feel i should be wearing a scottish widows cloak and wringing my hands, to show my sadness. However my emotions go beyond this socially adapted view of grief. I often feel angry, use inappropriate humour, practical rationality, keeping busy, etc to get through. I do cry, but rarely and that is usually on my own, in some obscure moment. I cried the other night, after we came back from dinner with some friends. We had a lovely evening, but had to cut it short, and Kevin was clearly in alot of pain. I found it hard to see him struggle, i wanted to help, but couldn't. They were tears of frustration.

I also find the "socially acceptable" conversations quite hard, mainly because they are becoming a bit rehearsed and boring. "Kevin is dying." "Oh i'm so sorry, you will be in our prayers..." This is usually followed by alot of nodding and serious face pulling, earnest expressions, looking at the floor etc. A few weeks ago i had this urge to break into song "There will be trouble ahead..." type of thing, i wanted a bit of variety on the whole thing, but it was my boss, and i knew that one needed to follow the "social norms" expected of me.

When grieving, Palastinian women are expected to wail, Jewish couples are expected to rip their clothes to show their despair. Coming from such a weak cultural standpoint, living in a very secular world, i struggle to know what to do, but i sense that others feel i should be doing things differently. I was really shocked when i good friend asked me "but you do love him don't you?" I would defy anyone to live and care for someone through treatment for 6+ years, and do it without feeling!! I did discuss this with Kevin, and he said "thats because you just get on with it", i would also add, it would be his worse nightmare for me to just stay at home with him and look after him. As he is getting more and more tired, he has said he prefers it when i don't work from home and he can have the house, the computer, the kitchen, to himself.

I am intrigued as to how people think i should "deal" with this. Please do put your suggestions on a postcard and post them below, they will be appreciated! Clearly i need guidance!

Thursday, 13 January 2011

I get by with a little help from my friends.....

I do think that i need to say a little something about the amazing contribution of friends. Kevin was diagnosed with cancer in December 2004, and there are some friends who have taken this journey with us all the way, without failing, faltering or flinching. There are friends we have also picked up along the way, who have also amazed me.

I have been astounded by how constructive and helpful people can be. This is not a journey that they have to participate in, and indeed there are some who have chosen not to, again, something i can understand and respect.

However, there are a core of friends who do not wait to be asked for help, they just come in, do things and don't even expect to be thanked! These friends have given lifts to appointments, waited for Kevin through chemo (he always prefered me not to do it, i annoyed him, i talked too much and kept looking at my watch), done emergency DIY (twice when Kevin was in hospital the roof leaked), taken Dennis (as i will call our little menace (his is the only name that is not real in here)) at short notice, dog walked and dog sat, brought round dinner and shopping and also gardening! One friend used connections to get us a 4by4 to get to hospital in the snow, in comfort!

There are lots of people who say "if there is anything i can do to help...". My default response is "thank you, but we're fine..". I am not sure what they expect me to do. I find it hard to ask for help at the best of times. Am i supposed to give them a list? This experience has taught me to be better at it, but it is still hard to do. I am independent, capable and proud of it, but i am not superhuman and juggling a full-time job, a small child, a sick husband and maintaining a home is hard!

There are also those who come round and help themselves to tea and cake, this too, is extraordinarily helpful right now, as Kevin is enjoying seeing people while he can and it is far better to see them whilst alive and able to enjoy their company. In fact we have had to organise times when people aren't here, so he can rest! For a dying man, Kevin has a very busy schedule for January!

Kevin is much better at asking people for help. He is determined to complete his vision for the house, and not being able to do it himself anymore he has enlisted the help of a builder friend (the one who fixed the roof for me), a painter friend, an interior design friend, his brother to do the bathroom and his sister to help him sort things out. I admire him being able to do this, i have never been very good at it (asking for help), he is getting things done - being quite bossy, actually! (Not that unusual for those that know him!) I always wait until it is too late to ask, so i really appreciate those who just do, not ask! I silently and publicly thank them with all my heart!

I woke up the other Saturday, looked out of the window and a friend was in the garden cutting up a tree that had been lying on the ground for some time, waiting to be sorted. Kevin does the gardening, we have very defined roles, and up until recently i have not encroached on his area and he has not on mine. I have started to keep a book on his jobs so that i know what to do, when he is not here to tell me. Believe me, he does tell me, whether i need to be told or not! We have developed these roles because we are comfortable with what we do and do it well, delegating is not something that either of us is good at!

This can cause the odd dispute, Kevin gets impatient easily and wants to do things himself. Friends have also been great for doing things and not having to take the criticism, he is much less critical of them. Is is true that we always take it out on the ones we love!

There is a book, which i borrowed from Grove House called "What can i do to help?" For those of you struggling to know, which is most, it is a good book to read. Many people struggle to know how to help, they don't want to intrude, many people hold back, i found it very helpful, although it didn't tell me how to ask for help! I have always been the patron saint of lost causes, helping people who don't really need it, i am learning to be better at boundary management, i am not taking on other's problems right now, i have enough of my own to cope with.

Kevin's brother said to me last weekend "you look less stressed". I was appalled that i could look "less stressed" for being told my husband has only 4 months left! But when i think about it, i am. Yes this is painful and hard, but there is now support, since December lots of people have called round and "been there". Our journey started in December 2004, and other than a few core friends who have been there in energencies, we have taken that journey on our own. Now the core friends have strengthened and we also have nurses and doctors visiting regularly.

Being busy and seeing people regularly is much better than feeling isolated and battling alone. I called this blog Carrie's War, after the book i read, when i was as a child. It is my war to find my identity and purpose in an ever changing situation. My battle to be a good mum, good wife, good employee in all the uncertainty, my battle to remain true to me, and also true to those i love. There were times last year when i sat up until the small hours of the morning planning how i would quit from being me! Thanks to those friends i have not yet lost my battle! I really cannot tell you how grateful i am!

Saturday, 8 January 2011

In the Words of Philip Larkin...

"They fuck you up your mum and dad." This is one of my favourite poems by Philip Larkin.

I really want to make sure that whatever else i do, i help our son through this awful situation, but like anyone who is dreading something I have been putting off the dreaded conversation. I asked someone from Grove House (our local cancer centre) to come and talk to us about how we make this as easy for him as possible. I have heard so many stories where children get forgotten, as if their feelings don't count. I don't want our son to have to face this alone and without support.

I dread him turning round to me one day and saying "its all your fault!" although i expect that will happen anyway, even if i do my damned best to do "all the right things". I found our meeting with Grove House strangely positive, if anything can be positive out of this (although i firmly believe that grief can be a very positive as well as a negative experience).

It seems that our instinctive inclusion of him into the process is the right thing to do. What does strike me is that grieving is a very individual process, and should be dealt with that way - individually, as well as collectively. It may seem strange to be talking about grief, when Kevin isn't dead yet, he is definitely very alive and all the changes to the house are proof of that! This is what Kubler-Ross calls "anticipatory grief", preparing yourself for the inevitable loss.
Over the years we have been very honest with our son about Kevin's illness, this was always to help him understand the constant change process that cancer brings. Without trying, we have been carrying on with this process, helping him to prepare for the loss he is going to feel so greatly.

People are very keen to tell you how you should deal with such things. I have a friend who is a psychologist and he told me i should cry in front of our son, show him its okay to get upset, but talking to Grove House, stopped my anxiety that i can't cry in front of him. I express my sadness, but don't show tears, this is my individual way of dealing with it. Thats okay as long as he knows how i express sadness. He does - i bake alot, and work alot. I know he knows this he has observed me and commented on it, he even told the neighbours!

In his own way he is also processing it. Walking back from school one day, not long before christmas, he was clutching a toy he calls Moo-Moo (its a cuddly toy cow). He said to me "Mummy, Moo-Moo's daddy died, but it was okay his Mummy was still alive to look after him, it would have been much worse if his Mummy had died too." Regretfully, at the time i was so shocked that i didn't make any response. This sentence spoke volumes to me. In it he told me he loved both his parents, didn't want to lose them, but needed to know that he would be safe and looked after. This is what children do with death, they want to know that their life will carry on pretty much the same as before. He keeps asking to see his friends, go swimming, do normal things, and as much as i can, i am keeping those little things going, that make life safe for him.

We have never discussed Kevin dying with him, he can't wait for anything, like any child his age, he endlessly asks when something is going to happen ( he asked how many days to Christmas from November!), so its not right to tell him yet, but instinctively he is preparing himself, with out help. Alot of his imaginative games have death and hospitals in them, its his way of making sense of it. At first i found this really alarming and wanted to stop him doing it, but once i got over my adult response, i recognised the importance of it.

Heart wenchingly, though, he is not yet ready to accept death. Kevin has cleared out various bits of the house, including all his pattern books for work. Our son asked where they had gone, and i told him "Daddy has stopped working, now." He looked at me and said "But he will need them, when he gets better!" Again, i didn't answer, this time, because i didn't want to. I don't want to lie to him, but i don't yet feel it is right to tell him, exactly what is going to happen. By not answering, i my mind, this was the best response i could give. Kevin and I are further down our grieving journey and acceptance of the end, than he is, he needs to get there at his own pace (as much as time and illness will allow).

Kevin and i have also discussed that when he has gone, his workshop will be for our son, his "making room". He is so like his father, and loved playing in there while his daddy worked, its seems the best thing to do. They are both creative and like to make things, he can carry on playing in "his" workshop and doing what he liked to do with his daddy.

And for those who have never read it, here is the poem...

This Be The Verse

They fuck you up your mum and dad.
They may not mean to, but they do.
They fill you with the faults they had
And add some extra, just for you.

But they were fucked up in their turn
By fools in old-style hats and coats,
Who half the time were soppy-stern
And half at one another's throats.

Man hands on misery to man
It deepens like a coastal shelf.
Get out as early as you can,
And don't have any kids yourself.
(by Philip Larkin)

Well, we have a kid, one of us is getting out (not trying to) and the other is desparately trying not to be too soppy-stern!

Tuesday, 4 January 2011

The 40 Minute Warning

All the days of the holidays seem to morph into one, and yesterday, like no other, there seemed no rush to get up and go, until Kevin came in (he sleeps at erratic times now), and said "If you want to have a shower for the next three days, you've got 40 minutes before my brother gets here, he is putting a new bathroom in!"

Just like that, no planning. Kevin has always had a flare for the house, he was until, just before christmas a very good upholsterer (by trade). His workshop is at the end of the garden and he takes great pride in the house, (unlike me). Over the last few years, we have always joked that he must finish the house before he shuffles off his mortal coil, otherwise it will be left to me, and i just wouldn't get it right! The thought of me doing house design, makes Kevin shudder!

We had been politely ignoring Kevin's demise, which i suppose became apparent in September. From September to December we have played this little game where he would say to me every day, "I felt really tired today, so I haven't done any work, had a day off." I would respond "Well, there's always tomorrow, when you feel a bit better." Or something along those lines, it wasn't quite groundhog day!

In all the years i have known Kevin, his business has been something i have known not to interfere or get involved in, but i wander if perhaps i should have said something before. However he is a proud man, with a sense of purpose and independence and i didn't want him to feel there was nothing for him to do. His work has always been important to him.

It was only in December, the week before he went into a hospice for a week, and we got the final diagnosis of "nothing more we can do..." that i actually mustered up the courage to ask him to close down his business. I think this was partially becuase he has had my bosses' sofa for three months, and I was getting embarrassed, i am not sure i would have even had the conversation has it not been for that. He took it very well, agreed immediately, perhaps was even a little relieved. He then responded with "I can sort things out in the house instead!"

Hence the sudden rush to get a new bathroom. Whilst he is not well enough to do it himself, he is determined to complete his vision of how he wants the house to look. I think he sees it as his gift to us. Whilst we are currently living in chaos, i do know that the end result (concocted in the early hours of yestermorning) will be much better than anything i could design or think up.

In all the years i have known him, we have gone places and he has pointed out with pride the work he has done. He wants to leave his mark, so when people come round in the future they can see his handiwork, even if, technically, it is his brother's.

I notice that the table downstairs is covered in various house furnishing catalogues, we had them hidden away and he has dug them out. I suspect there is more such work to come! I could be a little peeved by the lack of consultation, but that was only ever a game anyway. Kevin has always made the house look nice, the only unwritten rule we ever had, was that if i didn't like it, i was allowed to say so and it would be respected. I like the new bathroom he has chosen, so its just one less thing to worry about when he has gone.

Sunday, 2 January 2011

Getting through Christmas

Christmas has been suprinsingly normal. The usual family politics took over, people not being where they should when they should etc. I found myself very angry at it all, couldn't people make more of an effort!!!? however I also found it refreshingly predictable.

In fairness (people have made an effort), everyone has spoiled our son, who has got pretty much everything he wanted, and more!! He is desparate to show off all his new toys to his friends, but it is difficult having people over. Our normal christmas state would be a round of entertaining and he would have had plenty of opportunity to show off all his new stuff. This year, he seems to have moved in at the neighbours, they are great with him and he is happy to play with their son. They are also very hospitable to me, I think i am slowly making my way through their wine rack! (but i feel very guilty about this).

Today i was feeling very angry with the whole thing, and decided to tap into the works of Elisabeth Kubler-Ross (1929). I find myself to be a typical example of all that she says is wrong with the dying process. I am trying so hard to stick with politeness and societal norms of behaviour that i am, in fact making it harder for my husband (and probably my son) than it should be. I want to reciprocate to everyone's kindness and feel resentful that I cannot, as I am also aware that next year, as a single person i will be outside of the family scene that i interact with, and the social world i know will be very different (although a friend has pointed out that this is more my fear than a reality).

Kubler-Ross says there are five stages to grief; Denial, Anger, Bargaining, Depression and Acceptance. Reflecting on it, I can't find any sign of denial or bargaining within my psychological response to the cancer journey, but i have experienced and still am experiencing anger, depression and acceptance. I seem to move quite fluidly through all three of these stages. Although i suppose the "wanting to carry on as normal" is denial, so perhaps it is there too.

I often am very intolerant of things that shouldn't be an issue. Today we went out for lunch and i got fed up with the slow service and marched up to ask them to be quicker, normally this would not matter that much, but today i thought it was outrageous! (Kevin can't sit in uncomfortable chairs for too long) Often in the late evening, in my struggle to juggle all the many facets of my life, i wonder why am i bothering, what is the point? Then at other times I feel peaceful and determined to deal with this positively and help everyone through who is also on this journey.

Reading Kubler-Ross' work I really identified with what she was saying about the social taboos of death. She says that society makes it taboo, whereas it should be regarded as a stage of life. This interests me, because i can see that is what i am doing (trying to avoid the changes). I feel terrible guilt to our friends, especially those we have known since Kevin had cancer, could we have spared them this? I almost want to apologise to them for putting them through it. I didn't want to socialise at any of the christmas parties, it seemed wrong to bring my "Kevin has a few months left" message to the usual christmas cheer messages that were expected. Every time our neighbours give me a glass of wine, i want to run home and get some bottles and bring them back because i feel i am not contributing to the party! However, it is amazing how society does shape our behaviours and most people respond with a "we must go out for a drink sometime, it will cheer you up" - why? Becuase we don't really know any other way of responding! And in fairness to Kevin, that is all he wants to do anyway, carry on as normal for as long as he can, but maybe with some slight modifications that will allow him to be there and interact as long as possible. So please ignore the morphine swigging and extra pillows we bring, and just keep calm and carry on!